CFS: Life After Recovery

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Oct 10, 2008.

  1. ladybugmandy

    ladybugmandy Member

    hi all. since i am starting to feel better (very slowly) ..and think that in a year or 2 i might actually recover after 15 years of illness...i find myself sort of lost.

    i will be almost 40...without a husband, kids, or post secondary education (and a plethura or psychological issues still left to contend with)

    i don't know where or how to start my life at this stage....and i certainly can't do anything even remotely stressful.

    anyone else in my position?
  2. Rosiebud

    Rosiebud New Member

    I'm glad this is happening for you and I've wondered myself, if I ever get better, what am I going to do.

    With me its age...but I'm sure I'd find something and you will too.

    Take it easy, start off slowly and dont knock your recovery back. There's a whole world of possibilities and if you want to take an evening class or two, clubs to join to meet people, then its there to be had.

    Good luck.

  3. SpecialK82

    SpecialK82 New Member

    Hey there :)

    So nice to hear you talking about recovery! How fun to dream about what to do next. I wonder if talking with a therapist might be a good way to explore options and discuss life's big goals?

    Going slowly is definitely key. If you are like me, you aren't doing anything that is actually fun - like a hobby because it all sounds to draining. Maybe you could start with doing something small that is for pure enjoyment. The mental/emotional boost you get from that will in turn help you physically. Then add on the next thing - maybe a little class...

    By the way, what % improvement are you at now?? I am so happy for you! :)

    Love, Kristina

  4. sscape

    sscape New Member

    Im lucky in that I managed to get the education and the kids before i was flattened a 2nd time with this disease. Consider online college. Think about jobs you can do sitting down. Graphic design, phone support can be stressful- depends on the product- information clearing house. Some libraries. Secretarial duties with nice bosses.

    All my earlier training is useless, but at least I had the experience, and the bills. (PPFFFT!) As it is I feel the pressure to get a job, but with four kiddies I think I already have the job, I just want to get paid. Im looking forward to actually cleaning my house some time in the next year. Im not talking Martha- flipping- Stewart- I just want all the floors mopped.

    What do I want to be when the kids grow up? Something that pays, is sedentary, low stress, and remotely interesting.

    Im sorry this darn thing took so many years from you. I lost three years, recovered, and then I lost the last decade.

    It's important to remember that people can find thier passion later and do very well. I met this famous sculptor who first started when she was 50 and is now 90 and a worldwide sucess. She does the big honking ones, too. This is just amazing to me. Think about it. A lot of the stupid things you would do or put up with as a younger person you are wise enough to avoid now.

  5. ladybugmandy

    ladybugmandy Member

    thank you for the wonderful replies:) certainly is fun dreaming about what to do after recovery. i have been dreaming about it so long but always got sicker... it's quite surreal realizing i am improving.

    specialk...i would estimate that i am about 20% improved now, but still dont seem to fit # 3 on dr. lerner's scale. i always gauge my improvement by my brain fog...which is the most distressing of my symptoms. are SO right. i am trying not to let the age thing limit me...and just keeping an open mind to anything that can happen.

    there is no limit to the age at which one can find love or fulfillment.

    i have been, on and off, looking at online degrees for a long time and perhaps that is what i will do...take a at a time, slowly. i will never attend a campus, which will put me at a disadvantage surely, but i cannot handle the stress that brought me the last time.

    i think the most challenging thing will be finding effective treatment for my depression and anxiety more than anything else.

    i am seriously thinking about studying microbiology one day if i can find a way to do it.

    thank you all again for your support and means more than words can say.

  6. sascha

    sascha Member

    i am going through a bit of what you describe. i definitely am better now- still very weak and rickety and wasted, but not sick the way i have been these past 8+ years of cfids. it's weird, confusing, disorienting to have the chance to start thinking in new directions. it's a challenge.

    i have a long way to go; need to work on next stages of health and get going on fitness improvement when i am able.

    something that helps me a lot to work through mental conumdrums and situations that trouble me, is journaling. i write on computer every day, 2/3 pages. i use this time to problem-solve, try to get to bottom of sadness or anxiety that has me in its grip- it's tremendously empowering to figure out something for myself.

    it's a miracle that some of us may actually have a chance to improve. i believe we need to be very very gentle with ourselves- take our time- we've been through a huge thing and need time to carefully process our way out of it, if we are lucky enough to have this chance. be kind to yourself!

    and keep writing about what's going on on this board. i'll be so interested to hear how things are going with you.

    best, sascha
  7. SpecialK82

    SpecialK82 New Member

    Sue ***** OMG 20% ***** THAT'S TERRIFIC!!

    Happy Dance, happy dance - I know it kind of goes up and down some but to hear you say 20% - Wowie! I believe that's a new high :)

    Please do something to celebrate your success, you so deserve some good things in your life. Woo-hoo!!

    BTW - I love the responses on this thread, it's very touching.


  8. cherylsue

    cherylsue Member

    I'm so glad to hear you are on the upswing? What level are you funtioning? Wait until you are 85% or 90% to attempt any life changes and make sure it's under control with ABX or supplements, or whatever...

    I'm functioning 80-85% and have been working full time for the past 7 weeks. I still have a ways to go.

    Best of luck,
  9. ladybugmandy

    ladybugmandy Member

    thanks, guys.

    cherylsue...that is amazing that you are working full-time. that is so encouraging and impressive. i am so happy for you.

    specialk and sascha...thank you for the kind words. this is all dr. lerner's doing...i feel i owe him such a that i cannot even describe. happy you are doing better:)

    i guess i didn't realize the feelings of loneliness i would have once i began getting well.

    as i mentioned, i live with my mother who is 73. i also have a sister who is mentally and developmentally disabled and currently lives in an institution.

    i have very little support aside from my wonderful mom and very often wonder what i will do when the inevitable happens.

    i guess i assumed that at this stage, i would have more of a support system built up - husband and more family, perhaps.

    i have suffered from major depression since i was 18. i was naive to think that as i became better, i would just be so happy to be alive, that the depression would dissipate. it is chemical and is very much still there.

    i guess i am just afraid and feel very alone. living life in a coccoon - albeit a horrible coccoon - for so many years, kept me away from challenges. now there will be so many.

    thank you for listening.

    [This Message was Edited on 10/11/2008]
    [This Message was Edited on 10/11/2008]
  10. ladybugmandy

    ladybugmandy Member

    sscape...i just read your post carefully. thank was uplifting:)
  11. ladybugmandy

    ladybugmandy Member

    thank you, hon. you sound like a very sweet and caring lady.

    i read your profile....are you in treatment?

    hope you are doing are very fortunate to have a wonderful family:)

  12. ladybugmandy

    ladybugmandy Member

    grammy.....i am so glad to hear you feel better and will start gardening. that really feeds the soul. bless your heart:)

    jam....thank you, my friend. there is real hope. that is priceless in itself.

    i spend so much time trying to plan the future...planning to take hard core science course...and getting worked up..remembering how the stress from the program i was in before i got sick made my anxiety and depression so much worse.

    i am making myself overwhelmed with it all....dreaming of catching up to my friends who are doctors...and have families...but i have to stop. i will make myself sick.

    maybe when i am well, i will just stay a secretary and pursue other interests (i have always had a strong desire to learn to sing, for example). i have to learn to accept that i do not have to have a prestigious career to be valuable.

    the main goal should be my stress level. the stupidest thing i could do would be to get well and then endanger my health again.

    i have shown time and time again that even though i am intellectually capabale, i cannot handle the stress levels and isolation that university always imposes. its just how i am...i am a depressive.

    sorry..just rambling! lmao

  13. Lichu3

    Lichu3 New Member

    20% improvement is a lot! And to hear you start to talk about the future is uplifting given all you've gone through.

    There's a multitude of opportunities waiting for you and everyone else, regardless of age. As others have posted, many folks did not find their calling until they were older. And some were deemed failures by family and friends because they did not fit the conventional idea of success. As a quick example, I'm not a fan of Harry Potter, but I do respect J.K. Rowling.

    As for friends who would judge you by your profession, how much money you earn, what car you drive, etc., these are not true friends. And if you judge yourself/ others by these standards, you could very well be missing out on a great many opportunities for friendship.

    If I ever get well enough, I would consider that a blessing and everything after would be gravy. One of the first things I would do would be to walk and walk and walk......without having to worry about post-exertional stress. I have a friend waiting for me to get well so we can go hiking in New Zealand.

  14. bigmama2

    bigmama2 New Member

    congratulations! i am so happy to hear that you are improving. what great news. i hope it continues and you slowly but surely keep getting better!!!!!!!!!

    by the way i also am 39. stopped working a few years ago due to cfs. also no husband or kids. and also i know that i can not handle any stressfull job, not now, and probably not ever again. i have struggled with severe depression on and off too. but for me the cfs is way more disabling that the horrible depression. my cfs is also gettng better with treatment. (stopped working, rest, sleep alot, vitamins, adrenal supps, took valtrex, low dose naltrexone, iron, etc etc)

    do you have any pets? my dog is the love of my life and is so therapeutic. cats are easier to take care of. how about a ferrett? i had ferretts in the past- pretty fun lil buggers. my dog adds sooooo much to my life.

    its never to late to make new friends, either. hey, maybe even dating eventually!

    best of luck to you sue! we are all rooting for you!
  15. SpecialK82

    SpecialK82 New Member

    Hi There. I noticed from your profile that you had very high EBV titers and that you have taken Valtrex.

    If you don't mind can you tell me about your treatment experience? I'm wondering how long you took Valtrex, what dosage, what your titers were initially and what they were when you stopped. Also, how much improvement do you think you got from the Valtrex?

    I also have high titers, 1:10,240 and just started taking Valtrex with Dr. Lerner 7 weeks ago.

    Thanks so much!
  16. SGR

    SGR New Member

    Congratulations on your improvement! That is so exciting. I too have more energy than seven months ago. It's very exciting. But I know what you mean about not knowing what to do next. I felt all summer like I'd just washed up on a beach after being lost at sea for five years. Like I'd been in a coma and was crawling out. It's disorienting to say the least. It's so hard to look back and really know about all the time I lost. But there's nothing that can be done about that. Have you thought about doing some volunteer work of some sort? I think it's important to get out a little and see what's going on in the world, and for me, there's nothing more gratifying than helping someone else. It really takes the edge off the lonliness. This disease is so isolating. It was a shock to me to be around other people and attempt to converse with my fried brain. But I had a wonderful summer inspite of my shortcomings, I'm very grateful for it.

    Good luck and keep sharing about your experience, it helps us all.

  17. Belinha

    Belinha New Member

    Congrats again! You're gonna love life!

    If you feel you've got up to a couple of years, star writing it now!

    Don't get me wrong I love my kids with all my being. But starting life, well you known an healthier life without kids is a plus at 40. I am 54 and still tormented with my empty nest syndrome.
    You're free to go where you please, and not always worried what they're up too, yes even when they are adults and move out your heart breaks with worry in today's world, plus when they leave at home you kinda control their spending but when they're on their own is "Mommy I don't know what happened but this month I'm a little short on cash. Can you help me out? I'll you back next monthLOL!

    A husband is really to get if you really want one, but think about it you've been on your own for a while with some difficult circumstances and adjustments, and now you'll have to find someone to adjust to all your quirks and habits picked up by life ruled by this DD. Haven't you been ruled enough? He's not going to come in and accept all this habits (unless he is from Venus)lol. Besides you haven't even given yourself the commodity of enjoying all the great things out there, like a boy friend who brings flowers, takes you to dinner, and the best part of it is it's your choice whether or not he comes in for a night cap, and if so it's also you're choice if he spends the night. Is he a gorgeous man with the funniest sense of humour that keeps a smile on your face when he is awake?
    What if he is? You let him spend the night and he turns into a flatulent snoring machine that doesn't let you catch a wink of sleep. Try little tests enjoy you're life but remember for the last few years you had enough lack of sleep. If you do get to the come in for the night cap moment, please always use your place (after of course making sure he has his own and has no wife living in it) by using your place, you maintain control and don't ever give that up you suffered to much for it.

    Take some of the other people advice here. Do something you've always wanted to do but were never able to. Dress to the red carpet and mysteriously take a play unaconpannied, confident and allure.

    Try taking a Yoga class but make sure the teacher is male, flexible and of course stress free, invite him for some herbal tea after class one day just to chat and ask a few question you have about yoga you'd rather ask away from his work place.

    And finally you ask: " anyone else in my position?"

    Do you know how many women would give their eye teeth to be in your position right now? You're kicking the crap out of the DD and you have the rest of your life to make up for it.

    Now stop dilly dallying and start making some plans.

    All my love,

  18. ladybugmandy

    ladybugmandy Member

    thank you everyone who posted!! so glad to see more people on the road to improvement.

    i was up 1/2 the night looking into courses i can take online.

    a friend of mine says it would be silly to study again because at this stage, i likely wont work in the field i study (due to age, money, the time it would take me to complete a degree, etc). he says i would be doing it just to "prove something"......ugh.

    well...i found out my GPA was about 3.05 when i got sick and declined rapidly after i won't be getting into immunology or microbiology at the university here.

    looking at those intense programs made me realize that it would just stress me out too much anyway. i could feel my depression and stress rising just reading about them.

    but i did find a decent online accredited university called athabasca. maybe in 2 years or so, if money and time allows, i could take a course at a time from home....and see how things go.

    for now, the best thing would be to just put it out of my mind and concentrate on getting better. i can't believe i am allowing my own internal pressures to resurface again..... after everything i have gone through!

    i really thought this illness would have taught me something...LMAO
  19. mbofov

    mbofov Active Member

    Well, first, almost 40 sounds young to me. I'm 57. It's all relative.

    Anyways, some things you might look into are EMDR, EFT, 5-htp or l-tryptophan, and Omega 3s. EMDR is a counseling technique which helped me very much in dealing wtih childhood trauma which had left me very anxious and depressed. (google it- it's fascinating, and there are books in the libary about it) Once some of that anxiety was resolved, it felt like something inside me opened up and I started living. I discovered and then developed an interest in photography in my mid-40s. It was the most wonderful thing. Being anxious and depressed takes all your energy so you don't have much left for anything else.

    5-htp and l-tryptophan are natural ways of increasing serotonin which I like. I couldn't tolerate prescription ADs. I hated the side effects.

    You can also google EFT - it's deceptively simple technique for dealing with any sort of problem (see You can do it yourself or have someone else do it with you.

    And meditation is very good for calming the mind and helping to reconnect with yourself.

    And Omega 3s in the right balance with 6s and 9s are crucial for emotional health

    You said you had major issues with depression. I did too, but got much better using the above things. Unfortunately, I still have CFIDS to deal with (post-exertional exhaustion etc.) but if/when I get my life back, I am looking forward to it very much!

    Take care --

  20. island-grace

    island-grace New Member

    There is a work which is extensively dealing specifically with your problem. It's the second half of Ashok Gupta's CFS/ME recovery programme, available at
    Myself I have recovered through this programme, and it has helped me a lot at every stage of recovery, also when it is about getting back into a normal life.

    Good luck,
    Island Grace